Amytrophophic lateral sclerosis (ALS) is a rapidly progressive neuromuscular disease that has no cure. According to the ALS Society of Canada, 80% of people with ALS die within two to five years of diagnosis and some even die within a few months. For these and other patients with neuromuscular diseases, advance care planning conversations aren’t just a good idea – they’re critical to understanding a patient’s wishes, and providing the best possible care for them and their family.
Dr. Stephanie Connidis, a palliative care physician and Assistant Professor in the Department of Family Medicine at Queen’s University, says that these important conversations are an integral component to the care that she provides to patients with neuromuscular diseases such as ALS. “We know that this disease is fatal and that there is no cure,” she says. “We also know that time is a factor. It’s vital that we understand both their fears and their wishes, and that family members understand their potential role as a substitute decision maker.”
Dr. Connidis says that ALS, which can strike both young and old, can also result in dementia, which can have a huge impact on decision-making. “By speaking with them early on, we can really explore what’s important, before it’s too late” she says. Dr. Connidis uses questions such as “What are your biggest fears and worries about the future with your health?” and “How can we help you get the care you want?” She notes that these questions can be more challenging for younger patients, who feel that the end is coming much too soon.
The Neuromuscular Disorders Clinic at Providence Care in Kingston, Ontario, takes a team approach to these conversations. Physicians, social workers and other health care professionals work together to incorporate advance care planning into discussions. They use Speak Up resources, such as the workbook, to help families navigate through issues around end-of-life wishes, and to help substitute decision makers gain the confidence to speak for others if they are required to do so.
“The majority of people have thought about these issues, but haven’t had the right opportunity to talk,” says Dr. Connidis. “As health care professionals, it’s our job to facilitate these conversations and give our patients and their families the best care that we can. Advance care planning enables that to happen.”